Back in March, we urged you to take action and inform your state health officials and departments to begin tracking ME/CFS as part of the their annually-conducted Behavioral Risk Factor Surveillance System (BRFSS). Many chronic health conditions are tracked using this system. State health departments use the data collected to plan health projects and allocate resources; national institutions like the CDC use the aggregate data to monitor national health trends.
Many of you took part as evidenced by the number of comments and questions we received. We are happy to report your actions made a difference! At the national BRFSS meeting in April, state officials voted to include 2 questions about ME/CFS as “optional” on the national BRFSS survey.
The questions concerned whether someone had ever been diagnosed with ME/CFS by a healthcare professional and whether they are still sick. In previous years, not enough officials voted to include these questions at all. To reach “optional” status, at least 70% of state officials had to agree that the questions were important. This status highlights the importance of ME/CFS and also means states who use the questions will receive some funding from the CDC and their state health departments to ask them as part of their state’s BRFSS. (Very few survey items are ever voted in as Core immediately and deemed mandatory for the survey.)
In the next few months, some states will begin field-testing the questions. We will keep an eye on this issue and inform you what happens and what next steps to take.